Wednesday, 17 February 2021
Statements by Senators
In Vitro Fertilisation
I rise today to speak of a game-changing new website for Australians planning a family, and that website is yourivfsuccess.com.au. My office was heavily involved in the formation of the Your IVF Success website and its tools, all of which were made possible with the support of the health minister, Greg Hunt, UNSW and the IVF industry.
Your IVF Success is a game changer for those who are considering embarking on an IVF journey—a game changer because, for the very first time, Australians are able to access objective and comparable data on each IVF clinic's performance. The website also includes an IVF estimator that will provide women with an indication of their chances of success, based on their age and circumstances. Anyone who has ever gone through IVF or knows someone who has gone through this very emotional journey understands that, until now, it was impossible to find impartial and comparable data on fertility clinic performance. If you were to call a clinic, you would be given selective data, and only that which they chose to share publicly. Some might give you their clinical pregnancy rate, others might give you their live-birth rate and some might choose not to share data at all, whilst others will share selected stats on their website. Frankly, given the tens of thousands of dollars that Australians are forced to pay for IVF, it has long been time for the game of blind man's buff to end. Consumers deserve to be able to make an informed choice when they choose a fertility clinic. They deserve truth and accountability.
Of course, this is true not only in IVF but across all medical specialties. It is my hope that one day we will have similar performance transparency for all specialists performing all surgeries in both public and private hospitals. Transparency and accountability are key to improving health outcomes for all of us. They also mean that outliers have nowhere to hide and must lift their game, all to the benefit of patients and to the benefit of the health system.
From my perspective, the yourivfsuccess.com.au website has been about three years in the making. We started looking into the issue of performance transparency in the IVF industry back in 2017. We began by tasking the Parliamentary Library to help identify which countries require IVF clinics to publicly release their success rates. We found that the US and the UK were both leading the way by publishing performance data for individual clinics. We wanted to do something similar for Australian patients. After all, if it was possible to do it overseas, why should it be impossible here? Why is the IVF industry effectively running a secret society?
What became clear to us was that there wasn't any legislative path we could take to make this happen. The data resided in private hands and de-identified data was able to be compiled only at a national level by UNSW through the existence of an industry code. So we had to think outside the box. We decided the closest approach would be to task the Australian Institute of Health and Welfare with collecting and reporting performance stats for every fertility clinic that receives public funds. We knew it wasn't a perfect solution, but it did show that something could be done. So I introduced the Australian Institute of Health and Welfare Amendment (Assisted Reproductive Treatment Statistics) Bill 2019. That bill got the ball rolling. That bill was enough to start a conversation with the IVF industry and government and to bring all parties together. With health minister Greg Hunt's support, an expert working group was formed to develop the website, which we finally launched on Monday this week.
The yourivfsuccess.com.au website is a wonderful example of what can happen when we don't let the past rule the future. We had always been told that a website such as this would be impossible in Australia, that it would be impractical and undesirable to publish the performance of individual clinics in this way and that it would only create a race to the bottom. I never accepted any of these arguments. The expert working group worked extremely hard to ensure not only that the information contained on the website is rigorous but also that the data cannot be manipulated by clinics to game the system. It means that infertile Australians now, for the very first time, can view objective measures of the performance of each fertility clinic.
An analysis piece on the ABC last month by medical reporter Sophie Scott and Angela McCormack demonstrated why this website is needed. It canvassed the views of 2,000 Australians. They said that they just felt like a number and they very much wanted oversight of the industry. They spoke of the emotional toll, the emotional roller-coaster, the impersonal treatment, the frustration and the profound grief that can come with IVF. Their analysis posed a number of questions that patients want answers to, such as: How can patients avoid spending outrageous sums of money to start a family? How can clinics find a way to make their patients feel less alone? Will unproven and costly add-on treatments be more tightly regulated? Will success rates published by clinics become more transparent? The story said:
More transparency around success rates of clinical practices would also provide patients with a more realistic understanding of their chances of becoming pregnant.
This is exactly why this website was created—to give patients some of the important information that they lack as they weigh up their options. All of Australia's 85 fertility clinics are listed on the website, and 92 per cent of them have consented to have their data shared. I must say, though, I was somewhat disappointed that two well-known South Australian clinics, Fertility SA and Flinders Fertility, declined to have their data shown on the website. Both state they are proud of their clinics. I would argue that, if they're as good as they say they are, they should be proud to display their results on the website alongside those of their peers. I certainly hope that they will do that very soon.
At the launch on Monday I had the pleasure of speaking with two women undergoing IVF, Ella Mannix and Jessica Van Bridges. Both have been fortunate to have one child through fertility treatment and Jessica is, fantastically, newly pregnant with her second child. It was gratifying to see how excited they were by the website. Jessica stated that she had used two different clinics and found comparing the two and assessing her chances of success very challenging. She said that, had the YourIVFSuccess website been available at the time, she would more easily have been able to make an informed decision about where to go. She said of the website, 'I think it will really help to empower couples.' Empowerment is what this website is all about. IVF is expensive and the process is often emotionally draining. The website can become a companion on the IVF journey for everyone who needs it. It is a useful resource and jumping-off point for every woman who is thinking of undergoing IVF or who is wondering whether their existing clinic is best serving their needs.
There are many people to thank for making this website a reality—people in the health minister's office, the Department of Health and within the industry—but I want to particularly single out Professor Georgina Chambers from UNSW's National Perinatal Epidemiology and Statistics Unit. I want to thank her for her careful attention to the performance data used and for her dedication on this project. I'd also like to thank two of my advisers: Maria Moscaritolo, whose determined work helped to lay the foundations that led to the website; and Dr Des Soares, who chaired the expert working group and steadfastly corralled the various interests to deliver this particular project in a very short time frame.